A very happy 5th birthday to our gorgeous little lady – and I’m sorry this post is exactly one week late! I always put up a happy birthday post for Lucia, but this year, life kind of got in the way. A few days before her birthday our poor Max broke two bones in his arm and had to have surgery to get them straightened out. Thankfully he is now doing really well.

We also still managed to have a birthday weekend for Lucia and she had the best time at her three parties! A princess one with a few of her little friends and two family birthday parties. For weeks she had been so looking forward to being a big 5…and now she is.

So, although it’s a week late – happy birthday to our beautiful girl. You make our hearts sing.

I was doing a bit of reminiscing the other day and flicking through old photos of Max and Lucia when they were little babies – and mostly feeling complete disbelief that they are now eight and almost five. It feels like I have blinked and all of a sudden they have grown up so much.

But aside from my heart having a little weep at the speed of time, I was also looking at photos of Lucia’s tiny feet and legs in those first months of her life and feeling a little bit sad, but also marvelling at the difference between then and now.

When Lucia was born the doctors noticed she had ‘puffy legs and feet’, but at that moment and for the first 12 hours of her little life we didn’t give this a second thought, as it was assumed this was just because of the way she had been crunched up in my tummy. You can read the rest of what happened next here.

Looking back at just how swollen both of her little legs and feet used to be brings back memories of the fear and uncertainty we had back then as to what could possibly be wrong with our perfect daughter. Was it life threatening? Was it connected to her heart? Or her kidneys? Would she be able to walk? Was it forever or would it sort itself out as she grew? So many questions until we go her diagnosis – and then a million more questions after that (and what feels like a million more everyday still).

It brings back the memories of nights I spent in tears feeling so helpless and wondering why or how this had happened. Trying to do some research on the internet which just made things worse. There’s only so many times you can read chronic, incurable, progressive before it really starts affecting you. So Daryn banned me from googling.

I also have very vivid memories of when our little nephew was born – two months after Lucia – and going to visit him in the hospital. He was so beautiful and we were so happy to meet him. But when we left the hospital I couldn’t stop crying because seeing his ‘normal’ (I hate to use this word, as what is normal?) feet and legs really made me realise just how swollen Lucia’s were in comparison. When we were holding and cuddling Lucia all day and night her feet and legs were ‘normal’ for her and to us. Over time they probably didn’t seem just as swollen in our minds because they were our beautiful little girl’s feet and legs – plus we were so busy parenting a three year old and a newborn, our exhaustion probably helped us forget at times. But seeing Seth that day really hit me quite hard and made me realise that actually, there really was something quite wrong.

It was only a month or two after this though that we found Lynne, our therapist, and we had someone we could talk to about things rationally, we began to understand this condition better – though we are still learning everyday – and were able to try and get some control over it rather than the other way round. And I think, so far, we are doing an ok job.

Those photos show just how far we have come in her almost five years of life. How her swelling has changed. How we have grown in confidence and how we are learning (still everyday) to manage her Lymphoedema.

It is interesting to see how her swelling has manifested more in her right leg and foot than left, especially considering the swelling was equal in both sides when she was a baby. We have spent hours, everyday, since Lucia was only a few months old caring for her Lymphoedema to the best of our ability, to try and ensure we maintain it and slow the progression.

After being in compression and converse all day plus an hour of Physio Touch treatment

Seeing her walking was an amazing milestone at just over 18 months – as we honestly didn’t know how she would manage some days given the fluid on the soles of her feet. Now I feel like I spend half my time shouting ‘don’t run!’.

The first time we got her shoes was a massive deal – she was almost two years old meaning although she’d been walking for months in the house, we had never been able to get her outside. We are very thankful for Converse as without them I don’t know what we would do! (And Matalan where we managed to get her a little pair of boots thanks to a recommendation from a fellow lymphie mum).

She is wearing compression. This was a huge step for us as we knew when we started down this path it would be for the rest of her life. But it is one of the best things we could have done for Lucia. Compression has transformed our little girl’s condition and is such an important part of her everyday treatment.

We came across the Physio Touch machine – again an integral part of Lucia’s daily treatment and we wonder how we coped without it. This machine gives us more control and confidence over her condition everyday. Read more about this here.

She is at school and loving it. She is teaching the school, her teachers and her friends about a condition they knew nothing about before meeting her. And she takes it all in her stride. She gets extra assistance to ensure her compression garments are at optimum fit all day, at the toilet and supervised outside to ensure she is safe – and she comes out happy (but tired!) each day.

She started ballet class – and seeing her beaming while she performs her dance moves each week makes our hearts sing, as again, this is something we weren’t totally sure would even be possible. You can read more about her love for ballet here.

She is getting on with living and loving her little life – despite having a not very nice condition. She can be very matter of fact about it if people ask which makes us so proud as she doesn’t consider it as a big deal. It is just part of her.

Yes she may tire more easily, find some things slightly more difficult, need a bit of extra help in her care and daily treatments to ensure all her needs are met – but she accepts all of this and just carries on.

She is amazing. Inspiring. Strong. Fiesty. Stubborn. And she never gives up. As she said to me one day: ‘Mummy, I have Lymphoedema but I can do anything.’ Oh yes you can my girl, oh yes you can.

Happy New Year to you all! 2017 is here! And we must be one of the few houses that still has our tree and lights up, but the kids only head back to school tomorrow so we’ve been enjoying the glow for a little longer.

We have all had a lovely few weeks break off work and school, enjoyed lots of time at home (in our pjs), played with the toys and games that Santa delivered, took a trip to the cinema and had a few walks in our local forest park which is one of our favourite ways to spend a family afternoon.

The main aim of the Christmas holidays this year was for all of us to recharge and to try and get Lucia back up to full power before going back to school. (If you check out my last post you’ll see just how tired she has been and susceptible to illness since starting school). We were gutted though when she woke up on Christmas morning dosed with a cold and cough that has taken most of the holidays to shake, including being up most of Christmas night. But she is over the worst of it, has been eating better than she has in months and her energy levels have definitely picked up too.

This Christmas I have also felt a bit more chilled out (believe it or not) when it came to Lucia’s compression. By that I mean I have handled a few days of her not wearing her garments. Shock horror!

Always learning

Over the last few months when Lucia has been ill we have learned that she can cope with a days break from her compression. One day when she was feeling particularly bad we just thought it would be cruel to go through the daily routine of struggling to get her into her garments, especially when she was feeling so rotten. So we didn’t. But believe me when I say, that this was a decision I particularly wrestled with and fretted about in case something really bad happened – in my head I had fluid zooming into her legs and feet at high speed and ballooning out of control. Completely irrational and of course, in real life that’s not going to happen…and it didn’t. So we learned that she can cope with a 24 hour break with no detrimental effect.

Compromising

Therefore, during these Christmas holidays we have relaxed and allowed her a few days of freedom – with a little compromise. On the first of our pj days Lucia really didn’t want to get her tights on and wanted to just stay in her pyjamas like Max. Usually we put her tights on and pjs over the top, but on this day she didn’t want to.

So we came to an agreement that if she wasn’t going to wear her tights she had to wear her toe glove all day. (Or toe caps to give them their official name.) We have had a toe glove for a few months now and it does an amazing job at reducing the fluid in her right foot and toes. She is mostly happy to wear this and it means that I feel a little bit happier about her not wearing her full garments and Lucia gets to have a ‘day off’ which she loves.

It has taken almost three years to get to this ‘relaxed’ point though which just shows how much there is to learn about managing this condition, the trial and error involved, sussing out what works for your child and what doesn’t and now learning to compromise with Lucia so she can begin to feel in control of her own condition. But most importantly in all of this we still need to ensure that we are continuing to do everything we possibly can to manage her Lymphoedema everyday, as this is the key to maintaining it. I feel like we are continuing to build up more confidence in what we are doing and working on getting that balance just right for us – and most importantly, for Lucia.

I can’t believe it’s nearly Christmas (and it’s been two months since I have posted. Way too long!) Things just seem busier than ever at the minute – and I know that goes for everyone. I constantly have a blog post or two in my head but finding that hour to actually get it out of my head and onto this site has seemed impossible lately!

Anyway, this is an update on how Lucia has been getting on at big school and what we have learned so far. It is also a post that I’d love to get some advice on if anyone has any experiences to share.

Loving school

So Lucia has now been at school for three months and she has been absolutely loving it. She skips in most mornings happy to see her friends, enjoys play time in the classroom, getting out in the playground and has a real thirst for knowledge and learning. She is meticulous in all of the little bits of work she has to do, participates really well in class and is loving learning to read and write.

She also still loves doing her homework (mostly!) – she used to ask for homework in nursery as she always loved sitting up at the table while Max was doing his – so now she has her wish. She was particularly excited when she got her first ‘proper’ reading book with words last month and now enjoys pointing out words she recognises when we are having a story. Her teacher also told us she is very well-mannered and well-behaved and always has a smile on her face.

Although Lucia starting school has been a big step, our minds have been put at ease thanks to a wonderful assistant in her class who takes amazing care of her each day. She makes sure her compression garments are adjusted every half an hour throughout the day so they are always positioned correctly, helps her at the toilet, watches her in the playground for any trips or falls, makes sure she is safe going up and down stairs and overall just makes sure she is ok physically and mentally. And Lucia absolutely adores her. Knowing there is someone there looking out for her definitely helps at the morning drop off.

A few things…

However, there are a few things that we have noticed since September, and that is Lucia’s tiredness and sickness levels since she started Primary one. And it is all the time. I remember Max being really tired when he started school and I know all of the Primary one children are exhausted as it is such a huge change to a four year old’s life and routine – but I do think Lucia’s fatigue is more intense.

Nursery was only two and a half hours long and Lucia was in a class of 26 in a separate part of the school. Now she is in for five hours a day and mixing with over 400 children on a daily basis in the lunch hall, playground, assembly and up and down corridors.

Sickness

Since starting in September, Lucia has pretty much constantly had some kind of sickness. High temperatures, sore throats, bad chest, the dreaded vomiting bug and never ending coughs and colds. She has been off school a number of times already, but even when she is ‘better’ she still always has a rotten lingering cough and cold. Then, just when we think she is improving she’ll wake up in the morning completely dosed once again.

So my first question is, do those with lymphoedema or parents of children with lymphoedema find this? We know that the lymphatics and immune system are intertwined and therefore her immune system is compromised, so is this just a normal part of life that we will learn to deal with? Or as she grows up will she grow stronger and more tolerant of illnesses? It’s just not fair and we feel so so sorry for her little pale face.

Fatigue

And then there’s the fatigue – which obviously the sickness also feeds into. But oh my goodness, this is a whole new world of exhaustion. She comes out of school completely wiped out – she is so tired some days that she can’t physically walk to the car and needs carried because her wee legs just can’t manage it. When she gets home it can be tough to get her changed/fed/or homework started because she just can’t physically or mentally manage it and all she can do is get onto the sofa and rest.

She is a lot more teary that she would usually be and will have more frequent melt downs over tiny little things because she is struggling with this fatigue. She has even said to us on several occasions that she doesn’t know why she is crying (or shouting!) and in her words, ‘just can’t control it’. I know I can certainly relate to that – when you are just so tired that all you can do is cry.

She needs wakened every morning and it takes her time to ‘come round’ before breakfast and getting dressed – and some mornings asks to be carried up the path to school. Her sleep can also tend to be quite broken which obviously doesn’t help either – she can be up once or she can be up four times a night which always has a knock on effect.

Her teacher even commented at our parent-teacher meeting that she can see Lucia flagging in the afternoon – and it’s not an ‘I can’t be bothered doing this activity anymore’ but an ‘I can’t physically continue on’ and they will take her work away and allow her to complete it at another time. It’s so good that they understand her well enough to not push her at these times.

Add to that the days that we carry out her Physiotouch therapy and we know she definitely feels more fatigued the day after, as we can see it.

So again, is this fatigue normal? Will it get better as she gets older and adjusts to school life?

Aches and pains

Finally, maybe it is just as she starts getting a little bit older she is learning how to articulate things a little better, but she also now tells us about pains in her legs a lot more often. Nothing major thankfully (apart from today when she seems to have strained her calf muscle) but just general soreness or maybe it’s stiffness. She would sometimes mention her ankle being sore, particularly after ballet, but she has also talked about a sore hip/thigh/knee on both legs at different times over the last few months and at various times of the day.

Again – is this normal?

It can be so hard and frustrating for us as we are always trying to ‘guess’ how or why she is feeling like this since we have no clue really how lymphoedema can make you feel. So if anyone can give us any sort of feedback that you think may be helpful it will be gratefully received.

Happy little lady

Aside from these few niggles, Lucia is still her happy little self and just gets on with enjoying her school life, being with her friends and of course her beloved ballet which is the highlight of her week! We do always be mindful of her tiredness and ensure that we allow her enough rest at the weekends and ballet is more than enough as one outside of school activity. We very much let her lead us and if we have plans to do something but feel she could benefit from a rest day instead then that’s what we do.

Three years ago, when Lucia was almost 19 months old, she began to take her first steps. On average, most toddlers are walking unaided by the time they are 15 months, but some don’t walk until they are 17 or 18 months old – especially if they are bum-shufflers. Lucia was the queen of bum shufflers and could make her way around the house at lightning speed! But we do know that her Lymphoedema also more than likely held her back on the walking front as the soles of her little feet were so filled with fluid and we guess her legs probably felt heavy as well. Nevertheless, once she did get started she was the cutest little wobbler!

However, three years ago we didn’t know whether she would walk properly, never mind run or dance. But now, we have a dancer in the house.

Lucia started ballet classes a few weeks ago and it is already her most favourite thing in the world. I have never seen her as happy as when she is in that room practising good toes and naughty toes, riding unicorns, leaping like a frog, twirling and spinning and dancing on her tippie toes. Her face beams with joy for a full hour as she listens to her teacher’s every word and throws herself into every part of this wonderful new world.

She counts sleeps until it is time for ballet and wakes up in the mornings asking, ‘is it a ballet day today?’ We’ve even had tears on a school morning because she thought it was a ballet day! It really has been an instant love.

Finding the right class and teacher

Lucia has always loved dancing around the house and had been asking to go to a ballet class. In the back of mind I had always worried that this might not be possible – for the simple reason that we may not have been able to get ballet shoes onto her little feet. Plus, we had to find the right ballet class with the right ballet teacher.

We wanted a class where the teacher’s main aim was fun – especially at this age. Where the children’s most important role was to enjoy themselves. There are so many classes in our area but I just couldn’t find one that was 100% right for us and our girl.

I then by chance heard of a class in our village – one who’s reputation preceded her as a kind and caring teacher, who is wonderful with the little ones, who gives them the right amount of encouragement but makes everything fun and exciting.

So I rang her and had a good chat on the phone about Lucia’s lymphoedema and arranged to meet her one evening to see if, first of all, we could get ballet shoes to fit. From that first meeting we just knew that this was the ballet school for her.

Sonia immediately made us feel relaxed and told us that Lucia’s lymphoedema wouldn’t be an issue – that she would be able to get her sorted. And she did. She had brought her bag of ballet shoes and tried a few different pairs on Lucia, being so gentle with her feet. She decided on a different sized shoe for each foot and although the one on her right isn’t the best fit because of the fluid on the top of her foot, Sonia was happy it would work ok.

As soon as Lucia stood down in her very own ballet shoes her little face was beaming – we went home and I’m not sure who was more excited, me or her! She didn’t want to take her ballet shoes off and was bouncing up and down the house. Thankfully, her first class was the next day so she didn’t have long to wait.

The first class

Next morning, bright and early we headed off. Originally Lucia had asked me to sit in the hall and watch as understandably she was a little nervous – but in the end she didn’t even need me to (though I did stand outside and look through the window!). All the little dancers put their ballet shoes on outside the room before lining up for class. They also all bring a little toy with them which Sonia collects and sets on a table at the front of the class which is such a lovely idea. Then one-by-one she welcomes each girl by name, they hold their skirts out and run on their tiptoes to the back of the hall to start.

And off Lucia went – with that huge smile never leaving her face. Every now and then she would give me a little wave through the glass, but mostly she was absolutely absorbed in the class. As you can imagine, I stood for an hour with tears in my eyes feeling like I could burst. I was so happy and so proud. So happy that her dream had come true, that I was watching my girl doing something that she clearly completely and utterly loved, so proud to see her starting this new class with such confidence, doing what the teacher asked and being just the same as everyone else.

The practicalities

So, as you can imagine it’s not just get up, get your ballet shoes on and go for us, bearing in mind class is at 9am on a Saturday morning and Max also heads to football at the same time! We have a bit of a treatment routine – as soon as Lucia gets up we put on her Juzo toe caps – or toe glove as we call them. (I will do a post on these as we are really impressed with what they do.)

Essentially we need to reduce the swelling on the top of her foot as much as we can in this short space of time before ballet so her shoe fits a little better – and this is exactly what the toe glove does. Thankfully, Lucia is happy to get this on as she knows it helps. I also out on her right shoe as well to help compress the swelling a little.

Then, when it is time to get ready, the shoe and glove come off and on goes her compression tights. Tights are part of the outfit so although Lucia’s tights are a slightly different colour and much thicker, they are fine to wear. It’s also really important that she wears them when exercising for her to gain maximum benefit. Then we get her converse on for further compression on the top of her foot so that by the time we get to class the swelling will have reduced a little since she first woke up.

And of course, one solid hour of walking, running, skipping, dancing, spinning, tip toeing, leaping, jumping, pointing toes and more is wonderful for Lucia’s Lymphoedema as it gets her lymph moving. Ballet is such fantastic exercise for her condition as well as being brilliant for her health, fitness and confidence.

Elastic issues

Ballet shoes have elastic over the top of the foot to keep them on and after the first class had left a huge dent across her right foot. We could see the damage through her compression garments so we took them off and put her on toe glove again and after a few hours this finally settled. So during the week I bought some more elastic, removed the piece already on the right shoe and replaced it with a longer piece that ideally would still be tight enough to keep the shoe on, but not too tight so as to cause the damage to her foot.

I was extremely pleased it did the trick and was so much more comfortable for her as well.

Another huge milestone

So September brought two big milestones – school and ballet – and although she is very tired and adjusting to this busy new lifestyle she is such a happy girl. And I am a happy mummy. I stay and watch her at ballet every week (I also usually go in and adjust her compression half way through the class) and I think my smile is as huge as Lucia’s. She has found something she loves and that is all we have ever wanted.

Happy children

It is all we ever want for both Lucia and Max – for them to be able to find something they love and most importantly to be happy. And right now, Lucia loves ballet and Max lives and breathes football and they are having so much fun. After ballet class, Lucia and I sometimes head over to meet Daryn and we all watch Max playing football – and he is in his absolute element, diving to make saves, chasing the ball, scoring goals and celebrating with his team mates.

Our Saturday mornings have changed a lot – no more chilling in our PJs until lunch time! Long may it continue.

It’s nearing the end of September and I am still not sure if I have quite come to terms with the fact that both of my babies are now at school. For the last seven years and eight months I have always had a wee side kick at home with me on my days off work and I am trying to get used to the fact that this has now changed.

Max returned at the start of September as an experienced P4 pupil (with longer days and more homework) while Lucia is a brand new, sparkly P1. I had been trying not to think about all of this too much over the summer and then, all of a sudden, the time had come and Daryn and I were walking our two little ones into school by the hands.

Tights and shoes

Now, when I say I had been trying not to think about it all, obviously I had to do a little bit of thinking as we were trying to sort out Lucia’s compression (see my last two posts) to see if it was possible to get her some red garments to match her school uniform.

For so long we didn’t think this was possible and were deliberating whether to dress her in trousers instead of a pinafore and tights, to put red leggings over her garments or to just try and settle for white ones.

In the end, Juzo came through for us amazingly and Lucia is now wearing the colour ‘Cosmic Coral’ in the Expert range every day to school. They match her uniform to a tee and she absolutely loves them! When she first saw them she shrieked ‘they’re red!’ with the biggest smile on her face and we can tell she feels so special and proud to be wearing them. Most of the girls are still wearing white knee socks but this doesn’t phase her at all as she is so used to wearing her tights and she just simply loves the fact that these match her uniform.

As for school shoes she is rocking a lovely little pair of black Converse! We looked into ‘proper’ school shoes but knew that it was unlikely we’d find a pair to fit. So instead we got her black Converse, changed the white laces to black and she definitely looks like the coolest P1 around!

Amazing school

We are really fortunate that the school Max and Lucia attend is, quite simply, wonderful. This is the same school Lucia attended nursery at last year and the level of care she received was outstanding – the teacher really went above and beyond the call of duty in every way. Check out previous posts here and here.

We are very thankful that this is now being followed on for P1. We know that Lucia’s garments are being checked and adjusted on a half hourly basis, that she has someone to help her with toilet trips, put on her outside trousers at break time and lunch time, she is supervised from a distance in the playground in case she has any falls (she’s had two already but all ok) and is watched going up and down stairs for any trips.

We also put together a small first aid kit with savlon cream, steripods and mepore dressings for the teacher to keep in the classroom and to take out on any excursions. She also has brilliant emotional support as well as this practical support and it has eased our worries about the P1 transition hugely.

P1 is a huge step up from nursery with twice as many hours per day which is a lot for little four year olds. They are currently building up to the five hours and Lucia has actually been off sick a few days already (schools are a never ending source of germs, Max has had an eye infection too!) so she has only just completed a full week and was shattered!

Finding new routines

So we are still adjusting to this new routine and at the moment still working out how to schedule in her vital therapy around school hours, school runs, work, homework, swimming, football and other clubs as well as the non-stop busy day-to-day life in general. Because Lucia has been ill a few times over these last few weeks including lingering colds and coughs we haven’t been able to carry out her therapy, so we still need to figure out just when this will happen each day. Right now I really feel like there isn’t enough hours in the day – but we will have to find them.

During the week, afternoons will be the best times for doing her Physio Touch therapy as we have found if we use it before bed she tends to be more tired in the morning – which isn’t good for early school starts. However, we are still very much finding our feet and trying to get this new routine sorted, so things haven’t quite fallen into place just yet.

Overall though school is going well for both Max and Lucia so far and seeing them dressed in their matching uniforms and heading off to school makes us so proud each morning. Max is loving having his little sister at school (except when she blows him kisses in the corridor!) and has been doing the big brother thing by checking up on her in the playground and in the lunch hall which melts my heart. It has been a big change for all of us and we are all learning how to adapt to this new way of life – we just need a little more time to get there.

So I have about three blog posts written in my head that just haven’t made it on here yet – mainly because we were too busy enjoying the summer holidays before school kicked in, and then school started and it’s been a bit manic getting used to new routines.

So here is the first post which is a follow-on from my last one about Lucia’s compression. I was totally overwhelmed by the response I got and cannot thank everyone enough for all of the invaluable advice and support we received both in the comments and by email.

As you are aware we’d been struggling to find the right compression garments for Lucia and were getting increasingly frustrated as the months went by, because we kept getting let down with ill-fitting garments from our previous company.

So we decided to try a different company – and we are now in a much happier place. Enter Juzo.

Wonderful Juzo

Juzo was not a company we had tried before but we had a good look through all of their different types of garments, chose a pair that didn’t seem too thick or heavy and got Lucia all measured up. Unfortunately however, the type we had picked couldn’t be made in Lucia’s small size so instead they suggested Juzo Expert range.

To begin with, I’d like to say how amazing their customer service is – they were in constant contact with Lynne and with the pharmacy every step of the way so we knew exactly what was happening and when we would be receiving the garments.

And then they arrived. In all honesty my first impressions were a bit, ‘Oh no, they seem very heavy and ribby’ because previously we had been used to much lighter, smooth compression. However, these new garments were flat knit as opposed to circular knit, so they were always going to be different.

But they were impeccably made – you could see the time and effort that had went into making them, just for Lucia, and the quality was fantastic. I also found out that Juzo’s quality control is stringent and the first pair made for Lucia didn’t pass – so it is good to know how strict they are at ensuring everyone gets exactly what they need.

Getting them on

For the first 10 days or so after receiving them, Lucia point blank refused to let us put the tights on her. And when Lucia has her mind made up it takes A LOT to change it. She just said, ‘they weren’t her tights’ and I can see see where she was coming from as they were very different to what she had been used to.

However, after much talking (and bribery, obviously!) we finally got her to agree to try them on. The first fitting took almost half an hour (and two sore shoulders on my part) to get them on! But this meant that a) we were learning how to fit new garments and b) they were excellent compression – and we got there in the end.

The fit was brilliant. I know this might sound like a daft statement but they really were made for her. They fitted her everywhere to a tee. They fitted her feet so no squashed toes, the leg length was right so no gathering at the tops of her thighs, they came up far enough but not too far on her belly, there was no gaping waistband – they were brilliant. And most importantly, Lucia said they were ‘comfortable’.

Breaking them in

Once they were on Lucia did also say they were very tight, but the little super star managed them for about two hours on the first day before wanting them off. They we just slowly built up her time in them day-by-day until after a week or so she was able to manage them for between 8-10 hours each day.

And once we could see she could handle them and how beautifully they fitted we ordered another pair – both in ‘almond’ which is a sort of beige. We finally had made a break through and the relief was ureal!

Colours, colours, colours

The next brilliant thing about Juzo is their colour range. Lucia was due to stat big school in September and the girls can either wear white socks or red tights. Obviously the socks weren’t an option and we considered getting red leggings to put over her tights so she could be just like all the other girls. But then we discovered Juzo had a reddish option in the Expert range. The official name is ‘Cosmic Coral’ so we weren’t sure if they would be more pink than red – but when they arrived and Lucia saw them for the first time she actually squealed with excitement in the car shouting ‘They’re red, they’re red! I love them!’

And when we tried them with her uniform they looked perfect – and because they have that slight rib they just look like ‘normal’ little girls school tights. I have never been so happy! (Combined with the red in her uniform they pass as red but they also look more pink with other clothes, so they are pretty versatile.) I’m keeping the gorgeous photos of her in her uniform for the next post but the above photo shows the lovely colour and fit.

Relief!

So finally, after months and months of stress, worry and fears it feels like a massive weight has been lifted from our shoulders. It’s only when something finally works out that you often realise just how much anxiety you are holding onto – and when that anxiety is about the welfare of your daughter and her medical condition it is understandably pretty huge.

But now we are in a great place compression wise and Juzo are my absolute heroes right now.

A slightly different tone of post for me but when it comes to Lymphoedema there can be moments of sheer frustration and a lot of the time things are not very straightforward – so I thought I’d do a wee bit on that. (I have used the fish tank photo on this post for a nice calming effect!).

For a start we still don’t know how or why Lucia has the condition, why she has good days and not so good days, why her swelling can fluctuate so much or even how her legs and feet really feel to her. I think that is one of the toughest things for me – not having a clue how it physically feels for her. However, over her four little years we have learned how to try and navigate these moments as best we can and give her the best care we can, including the moments when we meet medical professionals who don’t have much of a clue about the condition.

A few examples:

The first time was when a paediatrician sent us home when Lucia was only a few months old telling us it was ‘just’ Lymphoedema and no advice on what we should do because he didn’t know.

Then, at one of Lucia’s appointments for her vaccinations I had to tell the doctor not to do the injections in her legs and explained why. However, the doctor tried to insist that it would be absolutely fine – to which I disagreed and firmly stated that no needles would be put into my baby’s legs and that was that. She got them in her arms instead.

Lucia recently had her four year check-up where I was asked, ‘does Lucia STILL have…’. She found it difficult to say ‘Lymphoedema’ as she’d probably never come across it before, so I helped her out with the word and said yes, it is a life long condition and that we see a specialist every month.

Compression frustration

My current frustration though is compression garments. We have been working pretty constantly with Lucia’s therapist to try and get things sorted (I think we are her worst nightmare at the moment!) but we just haven’t got there yet. Someone commented on a previous blog post that it took them 15 years to get the right garments and the right fit and I am really hoping that won’t be the same for us!

Lucia is currently wearing garments that are about 9 months old and pretty much useless. They are full of holes that have been repaired so many times I have lost count and new holes are appearing almost everyday through wear and tear. Bearing in mind she usually gets new garments approximately every three to four months you can understand where we are.

The company that we have used up until now just haven’t been making suitable garments for us since January of this year. We aren’t sure exactly what the problem is but not one pair we have received since the start of the year has been wearable – with some even pushing the fluid down and making her swelling worse. We are now trying a couple of other companies and hoping something will meet her needs in terms of fit, comfort and style. And this needs to happen sooner rather than later as she desperately needs new garments and I want them sorted for her starting big school in September.

Swelling up, swelling down

We also need them sorted because her most affected foot, ankle and leg (her right) has been fluctuating quite a bit in terms of swelling lately. There will be days when her swelling goes up for no apparent reason and days when it goes down – but we have no idea why. It particularly affects her little foot which can feel so thick and heavy at times, her converse can be hard to get on and stay on and her little toes also hold so much fluid. Her ankle also gets very puffy and it can be difficult to try and get this fluid on the move again.

So our compression hunt is continuing and to add to this we are also now thinking of looking into toe caps as well – which quite frankly scare the life out of me. When we first started looking into compression I remember coming across a photo of a person wearing thick, ribbed compression complete with toe caps and I cried at the thought of my baby girl having to wear them. They also looked so uncomfortable and I can’t imagine Lucia even allowing us to put them on – and she can be one very stubborn girl.

But we have to think of the condition and how we can manage it to the best of our ability. And compression is such a vital component of that management so we need to just find what works for her.

So while we wait to discover some new compression we are occasionally using a type of punched kinesio tape on her foot and ankle, under her current garments which does work quite well – when she lets us put it on. She absolutely hates getting it off so we don’t get to use it as much as we would like (see the stubborn comment a few lines above!).

Keep on going!

I feel like I’ve been a bit waffly in this post but my main point is the frustration that comes with this condition in a variety of forms and how nothing is straight forward and easy. But, as always we will get to where we need to be and will keep going until we do.

Last weekend we returned from a fantastic family holiday to France and it was a wonderfully chilled out few weeks where we spent time enjoying the sun, the pool, the food, the area, some precious time together and, of course, the football! We headed off with a few other members of our family and a friend as the boys in the group had got tickets to Northern Ireland’s qualifying matches in Euro 2016. Our little country got the last 16 which was a fantastic feat and as you can see from the cover pic we were very proud!

We all came home feeling well rested as we really enjoyed having nothing to do except put sun cream on, play in the pool, decide when to have lunch and whether we would barbecue or head out for dinner…no routine, no timetables, no deadlines. Just chill time (and football time!).

Preparation

The lead up to the holiday was a bit manic and stressful as there had been a lot going on with day-to-day life, including the continued nightmare with Lucia’s compression garments. Without getting into it all we are still having difficulty getting new compression tights. We had hoped to have new garments before the holiday but things didn’t work out. So the day before we left, as I sat on the floor in a mixture of panic and helplessness, we had to figure something out. And our wonderful therapist came to the rescue.

She came to our house to give us a crash course in a variety of different techniques we could use should Lucia’s Lymphoedema flare up when we were in France, complete with necessary supplies. She showed us how to bandage her toes and foot, how to continue it up her legs, how to use kinesio tape and some multi-layer bandaging. She also sent us you tube videos showing us what to do, printed out diagrams and let me video her actually carrying out the wrapping on Lucia so we could copy it.

Lucia has been wearing the same pair of compression garments for around eight months now (there’s barely any compression left in them and I have sewed them in a least 12 places on numerous occasions) but they had to come with us. We also found another old pair made at the same time that still fitted ok, but also with holes which I patched up – they went with us too. As did the Physiotouch machine of course, all of the extra supplies and our massive first aid kit. (The pic below is just a very small sample of our first aid kit!) At least half of a suitcase was filled with Lymphoedema stuff!

France here we come!

So we headed on our way at 3am with bulging suitcases and the hope that all would be ok. And it was.

France is only a two hour flight but we still made sure Lucia got up and had little walks down the aisle as well as drinking plenty of fluids as we flew. Our caravan site was then only an hours drive from the airport and when we got into the hire car we took Lucia out of her compression for a bit of a breather as she had been in them since the middle of the night.

Daily life French style!

Our normal routine went out the window and holiday mode kicked in pretty quickly. Our mornings were lovely and lazy but we usually tried to get Lucia into her garments for a few hours while we were enjoying croissants, pain au chocolats and playing games in the caravan. We would then get ready for the pool so off came the garments and on went the swimming costume. We also put a type of Kinesio tape with holes punched in it called Cure Tape on Lucia’s foot and ankle and it worked wonders when she was out of her tights. (We used to use this when she was just a toddler, pre compression.) Basically it lifts the skin a little to help the fluid flow better and it definitely helped to keep the swelling down in her foot and ankle where it would tend to pool when she has no tights or shoes on.

The caravan site had a brand new swimming complex and both Max and Lucia absolutely loved it. They played for hours in the different pools before getting wrapped up in towels and having a snack on the sun lounger. Swimming is one of the best forms of exercise for Lymphoedema as the water acts as natural compression, so having Lucia spend a few hours a day kicking and splashing like a mermaid was so beneficial for the condition. We could really see the positive effect it had on her, particularly her little leg.

After we had spent a few hours at the swimming pool we would come back to the caravan and shower the kids to get all the chlorine off before deeply moisturising Lucia’s legs and feet. We would then usually put her back into her tights for the evening, particularly if we were heading out for dinner or for a play in the park on site.

The Machine

We also brought ‘the machine’ – otherwise known as the Physiotouch – with us too. You can read about it in more detail here. It’s a great size to travel with so we carried it as hand luggage and we took time out most days to have a session since Lucia was having a lot more compression free time than normal. It kept the fluid moving and the swelling down in combination with the swimming, kinesio, compression and the extra elevation during rest periods.

As an added bonus we could charge the Physiotouch up and use it outside on the decking meaning we could still enjoy the sunshine while carrying out her therapy!

We had one evening where the fluid gathered in a ball on the inside of her right ankle – we hadn’t done anything different that day so have no idea why – but it was really quite bad. Enter the Physiotouch which really helped to break this fluid down and get it moving again.

We also had a few other instances where her little toes were more swollen than normal so we would carry out a bit of manual work to try and move it, though it is a nightmare getting fluid to move from toes. A few nights we wanted to bandage her foot but Lucia wasn’t keen and we didn’t want to push it.

The splinter

Everything was going so well until one morning in our second week Lucia complained of having a sore foot and not being able to walk properly. So I had a look and found she had a splinter in the heel of her most affected foot. It was very red, angry and inflamed all around it and I was immediately on edge – especially because Daryn was already away to one of the matches. I got our trusty Savlon antiseptic cream out and treated the area, as I knew we couldn’t start poking at it in case we aggravated the infection. Thankfully my sister, who was also on holidays with us, took a drive straight to the pharmacy to try and get some magnesium sulphate to draw it out, but to no avail. Instead, we went down the old fashioned route and she made up a bread poultice. It took a bit of persuading but Lucia finally allowed us to put it on her foot for a few hours that morning and the difference it made in that short space of time was unreal. The redness and swelling had calmed making a it a little easier for her to walk on.

We then put the poultice on again at bedtime (again it took a bit of coaxing) and she kept it on all night – and by morning the splinter was out! Thankfully no infection took hold and everything calmed down. Another learning curve and big thanks to my lovely sister!

We love holidays!

All in all we had such a fantastic time. Max and Lucia loved the adventure of flying on a plane, living in a caravan, sharing a room, playing in the pool, staying up late and we also did a few day trips including a safari park, zoo, dinosaur park and beach. We have always said we would never let Lucia’s Lymphoedema hold us back and we really don’t. We just have to think ahead, consider our options, make wise choices that will fit our needs and ensure we are well prepared for every eventuality.

Our experience over the years keeps adding to our confidence and we are continuously learning new ways of managing things. And loving living our lives at the same time.

We have been having the most gorgeous weather here over the last few days and it has been wonderful to enjoy a bit of sunshine and see the blue skies! In fact, the whole of this week is forecast to be bright and sunny which is fantastic, especially since it is Max’s school sports day on Wednesday. (Last year was freezing!).

Today was a particularly beautiful day and as a bonus it was also a bank holiday, so we were all off work and school. We had thought about going away for the day but instead decided to get the paddling pool out, the sun tent up and just spend it at home in the garden playing games, having water fights, picnicking, soaking the dog and chilling out.

And at one point in the day, as I watched Max and Lucia running around, in and out of the pool and racing up and down the grass I thought how far we have come. Rewind even just a year, and a day like today would have had me on the edge, a ball of anxiety in my belly and feeling completely out of control. But today wasn’t like that.

When we got up this morning we decided to get Lucia’s Lymphoedema therapy done as early as possible and get her compression on – that way she would get a few hours of garment wearing in the morning, as we planned to take her compression off for the afternoon and let her be free for a while.

But, to allow Lucia to have this freedom and an afternoon of fun we had preparation to do first.

Getting ready

The first thing was to check the garden for stones and lift them. Our dog has a love of stones and tends to collect them from the side of the house, leaving them all over the garden. It is a bit of an obsession with her! So Daryn did that and then cut the grass while I pumped up the paddling pool, cleaned it thoroughly (it was filthy after sitting in the shed all year!), filled it and put the sun tent up.

Then I checked the grass again for any stones that may have been missed or embedded in the garden. We also check (believe it or not) for very coarse bits of grass or weeds as these can be very spiky in patches, and got rid of those too. All of this is to minimise the risk of any injury to Lucia’s legs or feet.

Our decking also gets a once over for anything that could cause harm, but both children know they aren’t allowed to walk bare foot on the wood in case they get a splinter.

So once all of that was done it was bare leg time – though Lucia beat us to it. As soon as the pool was filled she saw Max strip off to his swimming shorts and she wanted to do the same. I found her sitting in the living room trying to haul off her compression and had got stuck half way! So I pulled them off, got her swimming costume on and put on her brand new ‘croc’ styles shoes!

Crocs

Over the weekend my mum and I went on a trip to Primark and managed to get both Max and Lucia a pair of croc style shoes for holidays and I was over the moon when we got home and found they fitted! So I had extra reassurance that she had a pair of shoes she could manage to put on and take off herself for protection when we were outside today.

Living life

And we really did have the best day. And I felt like I was relaxed. I couldn’t help but compare today to last year or two years ago. It is amazing how time and experience can make you feel like a different person, can help you to live a little bit more and can minimise some of the fears and stresses.

They are still there, but in a more manageable way. The vigilance is obviously still the same, but because we have now done this a few times before it is becoming slightly easier – like second nature I suppose. We checked regularly for any scratches or bites, dried her well after the pool in between her toes, kept her well moisturised and let her run wild to keep the lymph moving! And she was so free. Watching her and Max running around in bare legs and feet together is one of the most beautiful sights in the world.

Then, late afternoon, we brought her in and elevated her legs for an hour before dinner to give her a rest.

We will be heading off to France pretty soon so this was also great practice for the sunny days we hope we’ll get over there – though it will be very different when we are out of the comfort of our own back garden where we know exactly where the possible dangers lie and how to manage that.

But we will do it, we can’t wait to go and we know it’s going to be fab!

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More